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Wednesday, 02 February 2011 21:40

Aashayein - three days to go!

Written by Kamal Shah
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Its three days to go for Aashayein - the first ever event for dialysis patients. Am I excited or what? The tension is palpable. I can almost hear my heart beat. I can barely think about anything else. I am sure Vikram and Sandeep are in a similar state of mind! It is a huge event. The first time we are doing something on this scale.

The response has been overwhelming. We are already overbooked. People registering now are being put on a wait list. In case there are any last minute cancellations, they will be invited. The resources we have are limited. The space that we have is limited. So, there is no other option but to restrict the number of participants.

I took a few calls for registration. I could feel the excitement in the patients' voices about this event. It was the first time someone was thinking about them. There have been numerous events for doctors. None for patients.

The support by the nephrologists also has been excellent. All of them were very encouraging. I am hoping many of them will also come for the event, even if for some time.

Like any other event, there have been last minute surprises as well. Some changes in the speakers were also necessitated.

Yesterday, Sandeep and I went for a trial of the lunch. This was the first time the hotel was preparing food with leached vegetables and without salt. Today we are having a full rehearsal of the skit in the morning at the Banjara Hills center of NephroPlus.

Let's hope everything goes well!

And by the way - if you are a dialysis patient in Hyderabad, please come for the event!

... http://www.kamaldshah.com/2011/02/aashayein-three-days-to-go.html


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Tuesday, 01 February 2011 08:59

William Kolff must have turned in his grave today

Written by Kamal Shah
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Today, a television starlet was invited for a press meet organized by a chain of quality dialysis centers to spread the word about a free patient event. The starlet, obviously not familiar with the work certain bean shaped organs in her body do, day in and day out, was briefed about this and what dialysis actually is. I was also a part of the briefing and we went through the usual rigmarole about me being on dialysis for thirteen years (it is close to fourteen, by the way) and all that.

Here is what the starlet told the press after the briefing (the emphasis is mine):

"I am very thankful to the organizers for inviting me to this event. Dialysis patients are generally very depressed when they are diagnosed with this disease. It is really great that this company along with this patient has invented this treatment called dialysis so that kidney patients can lead a normal life..... Patients can come to this center and get a cure for their kidney disease."

William Kolff, who performed the world's first dialysis in the 1940s would have been very upset had he lived through till today.
image

William Kolff: "Errr... it was actually me, ma'am!"

... http://www.kamaldshah.com/2011/02/william-kolff-must-have-turned-in-his.html


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Sunday, 30 January 2011 18:32

iPhone trouble

Written by Kamal Shah
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My original iPhone 2G suddenly bricked a few weeks back. It just died and wouldn't even boot up. No matter what I did, nothing. It simply wouldn't start. I connected it to a power source. Tried DFU. Did everything under the sun. No effect. I had almost given up. Then my brother told me about a place in Secunderabad where they repaired iPhones.

So, I went to this place called Aanand Mobiles, in Emerald House, on S. D. Road, near Park Lane, Secunderabad. I showed them the phone and they said they would try to fix it. I had no problems with that because I had really given up on the phone so, whatever they would do, I had nothing to lose. I would realize later of course, how horribly wrong I was!

So, the guy there called me after a couple of days and said that they would need to change the power switch and it would cost Rs. 1,600. I asked them to change it. Then I got a call after another day and they said that they would also need to change the display and the mother board. It would cost totally around Rs. 6,500 (including the earlier Rs. 1,600). I thought for some time. Rs. 6,500 was a lot of money for an old phone. By then I had started using a spare Nokia phone that costed around Rs. 800 and it was worse than Chinese torture. Go ahead, I told them. I got a call after a few hours telling me that they are trying it but it may or may not work. Obviously, if it does not work, I don't pay anything.

I got a call in a few hours that they had fixed the phone and that I could collect it. I was thrilled. I went over to collect it and it seemed totally fine. I paid the money and walked out of the shop, a happy man.

My joy was short-lived, however.

Within a few hours, the battery drained completely. I charged the phone completely. A couple of hours later, the battery drained completely again. This happened again and again. I called the guy. They asked me to bring it over. A day later, they gave me the phone with my original battery. The battery problem was resolved.

For two days after that, the phone worked perfectly. Then suddenly the phone went off. Only connecting to a power source would boot it up. When booted up, the battery would be at where it was earlier, not drained at all. The phone date and time would be reset however. I carried along for some time. Same thing again and again. Strangely this happened only when a sim was inserted. If no sim was put, the phone did not seem to die. I switched to my Nokia again. I took the phone back to Aanand Mobiles yesterday. They decided to observe the phone for some time. In the evening, when I went back, they said, the phone was working perfectly. They showed me the call log and sure enough, there were calls made and the phone did not die at all they said. I took the phone back and said I would watch it for a while. I put in my sim and left.

By the time I reached home, the phone was dead.

I have given up. Back to my Rs. 800 Nokia.

... http://www.kamaldshah.com/2011/01/iphone-trouble_31.html


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Sunday, 30 January 2011 08:15

New UK developed Dialysis Machine

Written by Steve Bone
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Due to start clinical trials shortly with a potential for release to the market soon after in late 2011, a new UK developed dialysis machine is set to arrive. The unit developed by Quanta aims to provide a small, efficient and neat solution for those wishing to dialyse at home.
The unit, developed as a result of breakthrough work aided by the D4D co-operative and other experts, will be considerably smaller than conventional machines used in hospital, but it is being developed with a view to being as efficient.

One drawback at this stage as I see it is that it still requires a reverse osmosis water supply which adds to the equipment in the home, where the NxStage does not. But, this machine is designed to be able to operate virtually ‘on demand’ so that will prove useful to many, and given size and potential ease of use, will make home haemo a much more realistic prospect for many.
Personally, I am still waiting a simple solution that allows me to dialyse in rented accommodation so I do not have to have the works required to accommodate home haemo in a property that is not mine. I still believe that the NxStage allows that for me, so long as my dialysis consultants agree – which on recent debates suggests may not be the case.
There is a case for a varied solution on home haemo for different patients (within reasonable and economic constraints) to cater for different capabilties and facilities of the patient. As in many walks of life, a ‘one size fits all’ does not always work.
I wait with interest……

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... http://mydialysis.co.uk/blog/2011/01/30/new-uk-developed-dialysis-machine/


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Saturday, 29 January 2011 19:17

Sleepless nights

Written by Kamal Shah
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For the last few days, I have been having problems sleeping at night. I go to sleep soon enough but only partially. I feel like things are happening all around me. Some very urgent things. I can actually hear people talk and I respond, like it is day and I am working. I am not fully awake for sure. It is almost a state of limbo - neither sleeping nor awake!

The things that are happening are of two kinds - either it is related to the new Peritoneal Dialysis program we started at NephroPlus or it is related to Aashayein, the patient event we are organizing next Sunday. I have been very closely involved with these two and my mind is quite obsessed with these two things. So, I think this is carrying on to my sleep as well.

Yesterday, I had quite a terrible night. The whole night was one chaotic one. So much noise. So much tension. And to top it all, my mind caught on to a 'click' sound made by the blood pump of the dialysis machine. No matter what I did, I couldn't get my mind to ignore this sound. The dialysis machine probably made that before too but I never noticed. Last night however, I couldn't get my mind off it. I also tried putting cotton balls in my ears. This didn't work either. Probably because it was my mind hearing it rather than my ears.

At around 4 in the morning, I got frustrated and closed the dialysis session myself before the scheduled time had completed. Only then could I go to sleep. Sound, blissful sleep.

When I awoke however, I felt horrible. Like a zombie. Like how the surface of a drum would feel when it has been hit by a stick. It was like my whole body was vibrating at a low frequency. A slow buzz. I was feeling drained and week. I rested the whole morning. Only after lunch did I start feeling better. My closing weight was a good half kilo more than my dry weight so it wasn't excess fluid removal too. What was it then?

Last night, I decided to skip dialysis. I badly needed a good night's sleep. The fluid weight gain was also not much. So, I decided to take the night off. I had an excellent sleep and here I am, awake, fully rested, writing this post!

Have a great Sunday!

... http://www.kamaldshah.com/2011/01/sleepless-nights.html


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Thursday, 27 January 2011 06:26

'Aashayein' - a fun day for dialysis patients!

Written by Kamal Shah
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Hyderabad Kidney Foundation, a support group for kidney disease patients in Hyderabad is organizing an event exclusively for dialysis patients. The event called 'Aashayein- Let's celebrate life' is a going to be a fun day for folks lucky enough to be on dialysis. There is going to be a skit by patients, a beautiful fistula contest, some games, some education, an elaborate lunch (as per the renal diet) and a whole lot of gifts. And the best part - its all FREE!!

The event is being sponsored by NephroPlus and Dr. Reddy's Labs.

This is probably the first event in the city that is being held exclusively for patients. This is a great opportunity for dialysis patients to meet other dialysis patients, have some fun and get some information about dialysis, transplants, the renal diet and a lot of other stuff. There are going to be talks by a nephrologist, urologist, dietician, caregiver and patients.

I will be there for sure. If you are on dialysis and in Hyderabad on February 6th, please come for the event. Its being held at the Hotel Fortune Select Manohar on the Begumpet Main Road, next to the old airport. The event is free for dialysis patients and one other person. If you register early, you can get a free gift too! To register, call 4004-8000 or visit the HKF website.

image

... http://www.kamaldshah.com/2011/01/aashayein-fun-day-for-dialysis-patients.html


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Wednesday, 26 January 2011 15:12

Last 2 sessions First Stock Delivery Expected

Written by Francis Quinn
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Last 2 sessions & First Stock Delivery Expected

Were as the time gone there is only 2 more session left for me before i move home. But allot has been going on in the back ground to prepare for me to be able to do dialysis at home.


Just to recap and what you'll be expecting before you move home.


1. You'll get your bins, 1 big out side bin , 6 small bins & yellow bags
2. Stock, you'll receive your first order this should last you 3,4 weeks.
3. Dialysis machine you'll be getting this when you move from the hospital to home.
4. Chair.  you'll be getting this when you move from the hospital to home.
5. Table
6. Stacking Trolley


Am expecting all my stock tomorrow so I'll be able to update you on how much there is. And what space you'll need for it.

... http://home-hemodialysis.blogspot.com/2011/01/last-2-sessions-first-stock-delivery.html


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Wednesday, 26 January 2011 15:11

Builders Day 2

Written by Francis Quinn
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Builders Day 2

The second day the guys just completed the room and did the outside pipe work. They did a very tidy job and i was very please with the work man ship.


This is the finished room, the lino is non slip and i got it from a local flooring shop.

... http://home-hemodialysis.blogspot.com/2011/01/builders-day-2.html


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Wednesday, 26 January 2011 07:24

Goa - Dialysis

Written by Kamal Shah
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Dialysis is an important part of any trip I do that is more than two nights. I have never spent more than two nights without dialysis ever since I have got on to PD in 1999! So, whenever I do long trips like I did to Goa, I need at least one session of dialysis.

I had booked my session about two weeks in advance at Goa's Vrundavan Hospital at Mapusa (pronounced Mhap-sa). I was given the 8:30 p.m. shift. No other shift was available. In one way that was good. I wouldn't need to spend valuable day hours on something as boring as dialysis! I confirmed my session a day before leaving for Goa. Everything seemed to be fine.

On Saturday, the second night of my trip, I booked a cab to take me to the hospital. There was a minor hitch. There are no cabs usually around 12:30 in the night in that area. That was when I would finish my dialysis. How would I get back? I told the hotel receptionist who was booking my onward cab that I would figure out something for the return. Just get me the onward cab, I told her. When I got into the cab, the cab driver asked me why I was going to Vrundavan. I told him about the dialysis. He asked me a few more details and I explained to him. I then asked him about the return. He asked me not to worry. He would figure something out. When we reached the hospital, he told me he would get his friend to be there at 12:30 in the night and drive me back to the hotel. He also asked me to pay for both the onward and the return drive after getting back. This was really nice of him, I thought!

I went to the dialysis unit and introduced myself to Prashant, the technician on duty. I remembered him from my 2008 trip too where I had undergone a session at the same hospital. Vrundavan Hospital's dialysis unit is divided into two parts. The bigger section has about eight machines all for negative patients while the smaller one has two machines for positive patients. Each section has one television set. The unit is slightly cramped. It is like your run-of-the mill dialysis center - purely functional without too much thought to cheer and ambience. Like 99% of units in the country.

They have this weird system in Goan hospitals where they require the patient to get all the consumables required for the dialysis session from the pharmacy. So, I was given a prescription for the consumables and asked to get those and pay for the session and come back. I first went to the cafetaria and had dinner - a simple thaliand then bought the consumables (Rs. 1800) and paid for the session itself (Rs. 1000) and then returned to the dialysis unit.

The staff was quite amazed that I was cannulating myself. Prashant was not surprised. He had seen this before as well. Soon, I was on dialysis. My neighbor was watching a cricket match. Soon enough, he finished his session and I requested them to switch off the TV and all the lights. After that, I fell asleep. I awoke only a couple of times in between and then eventually when there were about 15 minutes of dialysis left. The best thing I can do on a dialysis session is to sleep! And luckily I could do that this time.

image


Prashant closed the session and weighed me. I lost about 3 kgs in that session. Good, I thought!

The techs and the nurses are very professional and experienced. They know their work very well and follow procedures very well. There are some differences in the way they do their stuff though. No neosporin is used (in Hyderabad, we make quite a generous use of neosporin). They use the regular sterile hospital kits for starting and closing compared to the readymade on-off kits we use in Hyderabad. Their food trolleys are much higher and are placed at the end of the bed (my leg accidentally hot the trolley once). In Hyderabad, the trolleys are kept at the side mostly. Small differences.

Once I was done, I wished them and then made my way out of the hospital where the cab was waiting for me thankfully! I got back to the hotel - feeling extremely light and airy, drained too. I haven't known that feeling for many years. This was so common when I was on in-center!

I went back to bed and fell asleep. The next morning we were scheduled to do Doodhsagar!

... http://www.kamaldshah.com/2011/01/goa-dialysis.html

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